PH drugs

Today reminded me of many things about life and PH. I had an appointment back at Papworth, just to check how my new PH drugs are working for me. As I sat in the outpatient department, it reminded me how PH patients all differ from each other. Two older men were in the waiting room, both sat with oxygen tanks on their laps. I really felt for them and wondered how they manage everyday with the constant breathlessness, tiredness and everything else that comes with PH. Then my thoughts were taken from this and my memories came back to me when I saw someone who strongly reminded me of someone I once knew. I don’t know if it was the mannerisms or just the look deep in the eyes but it was something so familiar to me to me. I have to admit but these kind of reminders always take me back to happy times, but then becomes marred with anguish at the awful memories of last year and feeling of being dreadfully let down.


Anyway, now back to my purpose for my visit. In November, I had, had a right heart catheter performed on me. The only description I can give of it is that a long wire is fed through a vein in the neck, down to the heart. The results from this simple procedure were that my heart pressures had worsened since I had the test last done in February. It was very unexpected news at the time and made me realise now that this is now something that isn’t going to go away. This being something that has been confirmed to me today.


Since November, I have been taking a cocktail of two PH drugs - macitentan and riociguat. Originally, I took macitentan with sidenafil from last November last year to February this year. In February, they stopped the macitentan and kept me on the sidenafil. They were delighted by the progress I had made taking both drugs, so felt that taking the one away and replacing it with another new tablet would work out well for me. By June this year, it was decided it was now time for me to try the riociguat. I guess the hope would be that I would be ok on just the riociguat, however, this was not to be the case when I had all tests performed on me back in November, they didn’t all come back as good as it was first thought. My first reaction was one of shock, I somehow believed that there wouldn’t be an issue but I knew in my heart that deep down, not much had changed for me. I was highly aware that I am not the same as my peers and struggle to keep up with people. I do not outwardly show this, but I feel it in my body.


So today’s decision is for me to now move back to the sidenafil rather than taking the riociguat with the macitentan. I guess I knew this would happen but I had hoped that the combination of the two would give me outstanding progress. I wish I could say I somehow feel lots better, but I guess I feel more or less the same. Although, it seems to sound awful, it’s nowhere near as awful as I felt last year. Giving the plus side, I can now walk that bit further than I used to and I am no longer passing out on people. Also, I know I’m in the care of specialists who are working to find the best PH drugs for me.